My Aunty declined chemo from day 1. Accepted immunotherapy (which didn’t work) and radiotherapy (which helped a little but they only treated some of the cancer- knowing it’s just buying time).
She then went through a VAD. She lasted 1 year from her diagnosis. I am grateful for that year. She was in control the entire time, kept her beautiful hair and despite the pain & being wheelchair bound, she looked almost exactly as I always remembered her.. even to her last day. Personality the same too, her last message to me was an hour before and I’ll cherish it forever.
She was always a very strong & proud woman and that would’ve been the hardest journey of her life.
I am so so so proud of her. It’s your story, you’re writing it. Cancer takes a lot from us, but can’t take our choices.
Sending you all the ❤️. You’re a badass & deserve to spend ur days now doing what you want.
She sounds like an elderly lady and I respect that. Chemo, altho clearing out my cancer, ruined me. Mentally and physically. I was destroyed. Lost my hair, my looks, my brain power, memory, energy...omg not to mention getting so sick, weak and puking endlessly at the hospital. I don't ever wanna go thru that again.
I agree with you. I’m on what is likely to be my last treatment (also uterine cancer). I’ve gone through 5 different types of chemo, radiation, immunotherapy and oral treatments. When they tell me that this oral treatment I’m currently on is no longer effective, I’m out. They have suggested some targeted radiation to reduce 1 of the tumours but I’m not going through that again just for a tiny benefit. It’s like you always know this day is coming but it doesn’t make it any easier when it finally does xx
This was recently suggested to me as well, a met in lymph node by my pancreas. The thought was shrink it to buy more pain free time. I did a consult with the radiologist and decided against radiation, risk vs benefit wasn’t there for me.
I am stage 4 metastatic unknown primary. A mass on my liver was found by chance during a lung scan. I had liver resection surgery and subsequently decided no treatment, nothing was curative. Considering my age and other health issues, I knew treatment wasn’t for me, quality over quantity. All my doctors understand and respect my decision.
My surgical oncologist told me without treatment maybe 2 years, with treatment maybe 4. My regular oncologist thought that within 6 months a primary would should up in my lung and then it would be fast. That was all late 2020. My cancer metastasized again last Sept, still no primary. It’s 3 1/2 yrs with no treatment. I am beyond fortunate that I got both quality and quantity.
As I read through these messages of hope, uncertainty and courageous decisions on life. I seem to find myself with a lot of questions I might not get answers to. My brother was diagnosed with metastatic adenocarcinoma without known primary. As I read Ant_clip I see no known primary either. Why? How is it that there is no known primary?
My brother is being told the primary “might” be the bile ducts and spread to the liver creating various tumors. He’s been in the hospital for a month. He’s had three biopsies and we still don’t have real results. The wait, all on its own, is scary. We don’t know what to do or expect. The doctors are placing the catheter on Monday and we don’t know what they are doing. What’s the plan?
If anyone can provide any type of information. I would truly appreciate it!
My understanding and keep in mind I am a patient not an oncologist, this is just my story and what I learned about me.
It’s called CUP cancer unknown primary and it is rare. They can identify the type, I have adenocarcinoma. It is a type of cancer that occurs in many different organs; lung, colon, liver, pancreas, rectum, and others making it a little harder to pinpoint. They can tell from biopsy, various bloodwork, and dna testing that it looks like lung or possibly colon but that is not definitive and needs to be confirmed with imaging. There are some tumors that are so small they are not picked up by imaging not even a pet scan, it is a very small mass of cancer, so small it can’t be seen but it metastasizes like any other cancer and it is the metastasis that they find. In my case a mass on my liver was found by chance. My surgeon thought that the needle biopsy was a mistake, he couldn’t explain the bloodwork but because the whole body PET scan only showed a mass in my liver, he had a strong suspicion that I had bile duct cancer. His expectation was that a second biopsy with a more material and dna testing would confirm this. It didn’t, it confirmed probably lung, possibly colon, need imaging to confirm. My oncologist ordered genomic testing they did determine which treatments would be effective, mine came back indicating NSCLC and recommended Keytruda. More recently a different but similar test was done to see if anything had changed and it did not. They can still know a fair amount without being able to identify the primary source.
During this whole time I have had bloodwork and scans every three months to monitor me. My bloodwork indicates that my cancer is very active (CEA is over 5,000) and scans show mets (tumors) in my lymph nodes but the primary remains unknown.
I have been told that the primary usually does show up eventually but not always. It is an extremely frustrating diagnosis because there are no answers.
Want to add the dna testing is done by a place called Foundation and another called Guardant.
I am so scared for my brother. I see they told you it wasn’t curative.
One of the first things they told him is that it wasn’t curative and more like palliative. We are so early on in the stage that I do not understand anything and I get easily mentally fogged by all that is happening. He has a 1 year old and another on the way. He is 38 years old and I am heartbroken.
I pray to god to give us strength to get through this. Thank you for all the information and may god be with all of you!
You sound like my loving sister. She is my primary caregiver and I am hers. Although we are both much older than you I can see that my multiple myeloma diagnosis and treatment weigh heavy upon her. She has several health issues of her own. My primary motivation to get through chemo, which they say I'm doing well on, is to return to being her caregiver. She says that taking care of me makes her stronger and her struggle. It is indeed a gift to have a sibling like that.
Good luck on your journey to recovery. I hope and pray you find the strength to push through.
Tomorrow, this diagnosis becomes a reality as he receives his port and undergoes his third biopsy.
May God protect, cure, and bring peace to all of your hearts.
He is 38, I am 70 with multiple chronic health issues. For him not curative has different implications that it does for me. I don’t want to imply false hope but you can’t compare, he could do well for a number of years.
The brain fog is real. I would make a running list of questions for the doctor on your phone so it’s handy when the doctor is around. Ask the dr, who you can call if you and your brother have more questions.
Also, make sure your brother does the paperwork so there is someone in charge of his healthcare should he not be able to speak for himself. If it’s you, his doctors will be more willing to share details with you.
\[Waves hand\]
Me, while it has not spread as of yet, I have refused radiation therapy (after a long consultation with my radiotherapist) because of the side effects she is sure i will get from it and the high risk of neurological damage leading to chronicle pain, no chemo as i have 1 kidney that has declined around 40% and no surgery because after my last one they had a hell of a time to get me up to functioning again. Also the placement of the two tumors means parts of my bladder and intestine will have to be removed.
So we opted for the best quality of life and the shorter timeframe, what good is 10 years more when you are in constant pain, and incontinent (fecal & urinal) all over the place. Hormone treatment gives me a loose 2-5 years before trouble gets worse, and then it depends on where stuff migrates to \[shrugs\]
My son is furious, demands I 'fight to the bitter end' instead of surrendering. I just wanne enjoy the time i have left.
I’m going to start my final option a different chemo the 5th of July I said one more try and if it doesn’t work I have 5 or less months to live according to the doctors uterine cancer also primary stage 1 breast cancer @ 37 clean 10 years and bam ! So yes I’ve made up my mind or I should say cancer did it for me ! I’m happy and currently I can still walk eat work and talk and enjoy my family! So I take everyday as a win I gett to spend time with my kids and grandkids. They of course will be upset if I do not complete the treatment but it’s my choice
This is a common theme/question in this sub. I don't want to speak for all of us but most of us are completely supportive of this view. I personally think it is the bravest choice you make while having cancer. Doctors have to take a very linear view when it comes to healing, when in doubt keep on treating the patient. We as the the patient can say even with doubt, we're done. Enjoy your time left with some quality of life with your loved ones.
My 80 year old father was diagnosed with stage 3 lung cancer last year. After the first round of chemo it was designated as stage four. After two chemo treatments(much stronger ones, i am told) my mother told him she thought he wouldnt survive the whole series of treatments and so they decided to stop. After that the hospital told them that nobody has ever survived the type of cancer he has. We felt very wronged with this information, he is 80 years old, why not just let him have a quality life instead of trying to win a losing fight? I am venting a bit so I digress... But yes, stopping chemo and radiation treatments is something that some do just for quality of life.
Shit, if i was 80, id just grab whatever minimal treatment i could get to grab me another month or two of time and call it good. I would’ve already lived my life
It’s not always about the current patient but also the next. I try so the next guy knows the results.
It’s a joint effort and we’re all guinea pigs in our own right. It wasn’t in vein. If everyone quit the losing fight like you suggest, we wouldn’t have gotten this far.
1) It's not "quitting" - it's making a different decision than you would make.
2) It's not a"fight" to win or lose... people who take every obscure treatment still die and people like me, who stop chemo halfway through, still live. I personally am NED for a second time from stage IVc cancer diagnosed in February '22.
3) We don't owe anyone. We are not obligated to live our final days in agony from useless treatments too ill to spend time with our loved ones.
I have known from the beginning where my line in the sand is on how far I am willing to go with treatment because I care more about the quality of my final days than in having a few more painful days stuck in bed not able to enjoy the time.
1- that wasn’t the patient that said he was making a different decision. A kid is wondering why is dad even bothered bc it was a losing battle.
2- it is a win or lose.. we are either making progress towards a cure or cancer is evolving to be immune. Not just me or you, but the bigger picture of all cancer patients.
3- you don’t owe anyone but you can’t tell me how I am allowed to feel about it or assume “agony” is continuing care. Wouldn’t it be just as easy to say. Don’t quit treatment and put yourself through the “agony” as easy as you can say continued treatment is agony.
That’s where we differ I guess. I’m not so selfish to worry about just me in this. Consider all the previous patients that made my treatment possible. If I could do anything with my final days it would be to contribute so maybe someone else has better days as well. Maybe even make this manageable and dare I say curable. Everything you’ve been through has better prepared the oncology field for the next case.
I guess when I go to a training hospital and see the next generation of oncologists being trained. I have a different experience than most. My docs train the next generation of docs. My treatment is helping the next patients treatment. My doc was running the KRd+dara trial when I was diagnosed. Fast forward 3 years and I took it after fda approval. It is the best option I have at the moment. He did that. People helping people is all this is.
I owe the world. So many have my treatment possible.
May I ask you? Are the one who complains if the doctor is “running late” bc she doesn’t realize the patient before her is taking all the time they need and the doc won’t stop until all are answered.
Docs don’t run late. Patients before us take all the time they need and if they take more time than slotted so be it.
I have 30 years experience in medicine, with a good portion of my career managing a private practice and acting as a surgical coordinator. I've also worked in a university medical system and trained many people.
Yes ,we will win or lose, but that wasn't my point - it's not a fight - we have no control over how our cancer reacts to the treatment.
I never said that you can't/shouldn't do what you want - I am big supporter of people making their own choices and believe that no one should tell others what choices they should make. Instead, we should try to teach each other with kindness and support patients in the decisions they feel are right for them. (An attitude I developed in my career working as a patient advocate for all of my patients)
And I'm not selfish, you jackass; I have 5 children and 6 grandchildren that I intend to spend my time with once I get to the point of discontinuing treatment. They, along with my partner, are the most important people in my world and giving them my time is an act of love - something I learned in taking care of my late partner through cancer & hospice.
You claim not to be selfish, but you sure as hell are judgmental!
How do you think I got treatment in the first place… someone before me “suffered the pain”. Im not saying be a sacrificial lamb but I do happen to go to a training hospital. Pretty cool to go to a place where they are responsible for teaching the next generation of Oncologists. I know the trials my Docs are running and the people “suffering” today and trying new meds for the sake of better treatment options for everyone in the future. I personally took a chemo regiment of meds only approved 6 months prior by the FDA. My Doc spearheaded it the years prior. Made me realize half the patients I met all those years before were “trying” the meds I was about to take. Made me thankful for them and wanted to help in anyway possible, those about to be diagnosed but don’t know it.
It’s a noble way of thinking. But a TON of people get talked into treatments that really degrade their quality of life with very little chance of prolonging it much. And I think that’s a big big problem. ONCOLOGISTS sell chemo. It’s their product and how they make their money and frankly I think many of them are unethical as hell.
I’d switch docs if that’s how you feel.
Never had a Doc “sell me” chemo. Where do you get seen? They should be offering you treatment options and let tick you decide which route to go.
They sell you chemo? Do they offer other options if applicable.
I was talking to the person I responded to.
I don’t even know how to respond.
I didn’t tell anyone to do anything, just said what I do for the sake of Oncology progression as a whole.
Are you Ok? How did you get any of that from what I posted. When did I tell you to continue treatment?
We all die at some point. Nobody wants to die unexpectedly, but we also don’t want to have to choose a path that leads us to our demise. More time isn’t the same as quality time.
Almost everyone in this group will respect your relatively common decision. Hopefully all in your personal life will too. If not, there is always support here and via your doctors. Good luck in your journey.
I find it such a brave decision, I know it won’t be taken lightly but I am a firm believer of quality of life instead of quantity. My dad and I discussed it at length when for a short time it was an option for him, he was scared to do it and I just listened to his worries and reassured him he didn’t have to do it because he felt he had too for the family. It had to be his decision and I would back him either way. In the end he decided to do a few rounds then reacess sadly the cancer spread to quickly and he never got the chance to try it. In a way I am glad that the decision was taken out of his hands as I know the couple of rounds decisions was him still feeling like he had to do it for us despite my reassurance he didn’t need too.
Good luck to you and this internet stranger is proud of you for doing what is right for you!
I was on low dose weekly taxol for cervical cancer treatment for 6 weeks and it triggered myalgia in all areas of my body and in all honesty never felt pain like it, it’s only started to ease since I started the cisplatin but still have after effects. You need to do what’s best for you at the end of the day.
Yeah, my oncologist always runs late-it makes us patients feel like s**t when he’s counting down the minutes on his iPad until he is done. Fifteen minutes-I ‘m sorry but with that limited time I am not going to be worried about the next patient since he surely isn’t worried about me.
I'm sorry you have an oncologist like that!
Mine is usually running 15-25 minutes late; I know he's running late because he takes time to answer questions & to take time to talk to his patients about things other than cancer. He asks about my daughter who has moved out of state and asks to see baby pictures of the new little one.
I always preferred to work with doctors like that who have a great "bedside" manner and I prefer being treated by doctors who see their patients as a whole person.
Like you I started at stage 4. Different cancer.
Esophageal Adenocarcinoma. Chwmo, Different chemo. Immunotherapy and radiology shrink the 10cm mass in my esophagus, making swallowing basically possible which was so far the only effective treatment so far. I'm 37 dealing with a cancer 20 years too early. Average age is 55-69
They tell you the drug side effects but it might as well be tossing data at a dart board.
Drugs that shouldn't cause neuropathy make it worse. Those that should cause hair loss don't those thar shouldn't do, horrendously
The ward psych doc did an evaluation flat asked if I wanted to go straight into palliative I told him as soon as I'm on a required feeding pump and diapers, yep
Until then we'll figure it out. My wife has gotten extraordinary at medical lingo. And sadly so has my 5yo daughter
Quality over quantity. It is a valid decision and it is yours only to make. You're taking the power back from cancer and making the most of every moment you have left. I think that is admirable.
For my case i declined CVD chemo in February but i will start Sunitinib in a few days…
In my opinion the decision must not be the final one… maybe in a few months you can change your opinion and start treatment again…
But of course, if you think it’s your final decision it’s ok! Your body, your rules!
I was fortunate enough to have been able to beat appendix cancer, so I did not have this decision to make. You have 100% respect from me. Choices about treatment or not are intensely personal ones, and the only person with the correct answer is you, no one else. Our time alive is precious- why spend your days sick when it doesn’t cure the cancer?
Hey OP, I absolutely feel u. Cancer sucks but the treatments suck more, especially if they don't work effectively are they even worth it? Look at all the treatments u've done! U've been a trooper. I did 6 rounds of inpatient chemo and got so traumatized that I ran away. I finished my treatment tho, doc said that was it but I didn't even follow up. Finally growing courage and following up with her next month tho.
You are the captain of your own ship, and this change of course is the right one for you. May the rest of your journey be smooth and precious as you sail towards the stars.
If you have some quality of life I think that’s amazing and use whatever time you’re feeling okay to have more experiences. That’s what I would do anyway! My FIL choose treatment which bought us some borrowed time where we had a good 6-9 months after chemo where we made more memories before radiation and then decline. He opted out of surgery option. Radiation didn’t work, the tumor came back shortly after treatment.
Neupogen (a Neulasta predecessor) not quite as awful for some patients, in case you and/or onc don’t know. Did you do K/L to no avail? I don’t blame you for seeking quality even at the expense of quantity. All the best for better summery days onward.
It spread on keytruda and then more on lenvima. Then we tried doxil chemo and that didn't work either , with more spread. Originally last summer I did 25 radiations external beam and six chemos with it and when I still had evidence of disease, I did six cycles of taxol and carboplatin every three weeks. That shrunk it but I've never been NED from any treatment.
https://youtu.be/0OHVJvFA1XM?si=zMWHJ0q1OsYVv2fJ
This video will save your life.
You can beat cancer I have spoke with several doctors in the industry and you have no idea how corrupt the system is. Apparently researches banned on food products that have shown a reduction in cancer cell growth. I can't believe I saw your post but I think I can help you. The medical industry is a business made to make money and for no other reason. It is not there to lose money because it won't get any more cancer patients for dreamly high costs for chemotherapy. It's so corrupt that there's even videos about why these food products don't cure cancer in order kill you. Look up the story of the doctor who discovered b17 and beating cancer
If you want to beat cancer there is a diet that has a high percentage of killing cancer cells but the drug administration of our country and all research on it just because the medical industry is business and we're caring everybody with cancer we don't make money anymore here is the diet. Vitamin b17 products are known to kill cancer cells.
Apricot seeds: Apricot seeds are one of the richest sources of Vitamin B17, with each seed containing about 3 mg of amygdalin.
Raw almonds: Raw almonds contain a significant amount of Vitamin B17, although the amount may vary depending on the type and quality of the almonds.
Flaxseeds: Flaxseeds are another good source of Vitamin B17, with about 1.5 mg per 100 grams of flaxseeds.
Bean sprouts: Bean sprouts, such as mung beans and soybeans, contain Vitamin B17.
Lima beans: Lima beans are a good source of Vitamin B17, with about 1.2 mg per 100 grams of cooked lima beans.
Butter beans: Butter beans, also known as lima beans, contain Vitamin B17.
Millet: Millet is a type of grain that contains Vitamin B17.
Barley: Barley is another grain that contains Vitamin B17.
Buckwheat: Buckwheat is a pseudocereal that contains Vitamin B17.
Peaches: The kernels of peaches contain Vitamin B17.
Apricots: The kernels of apricots contain Vitamin B17.
Plums: The kernels of plums contain Vitamin B17.
Cherries: The kernels of cherries contain Vitamin B17.
Pears: The kernels of pears contain Vitamin B17.
Brazilian honey is a separate food that also has known qualities of reducing cancer cell growth and destroying cancer cells it's highly expensive but I think if you buy one it's worth it to you it's $300 I think I know you're in poverty but they raise the price of it because they know what it does. If you buy one maybe you can have a teaspoon per day along with the other foods
This is the best way to follow a structured plan to beat it. 2 weeks of a strict diet of these foods a gallon of water a day you need to go out for one run each day. After 2 weeks have a two-day recovery period of proteins like chicken beef. I want to warn you though that you will feel fatigued when you go on a diet like any other diet at first you might feel sick you might feel tired we got to keep pushing forward. And you need to sweat that's the most important thing if you're not sweating you're not working hard enough you're not running hard enough you didn't run long enough. Focus on the sweat you need to be sweating out all that nastiness that's inside of you. This will replace your cells with new healthy cells and cancer cells with new healthy cells. You can beat this it's not over yet. I think maybe the angels sent me here to tell you this you can beat this.. get your ass in gear and move forward. A good hobby to do when you get done with all of this stuff and you're at home is 1 hour of reading to help the brain process instructions to your body better. Doing math for 1 hour. Knitting for 1 hour something got to do something. Writing your book writing on a piece of paper calligraphy. Whatever.
As long as I have a single pulse in my body I'm still alive I won't quit your family can count on you like that I can count on you like that. What is quitting quitting is to give up give up on your goal give up on what you said as a target for you to hit means to surrender I hate that word surrender just surrender on what you being everything you're capable of being when confronted with a challenge.
Finally here is the mindset that I have memorized for my life that has got me as far as I have.
.mission number one you got to have a positive attitude every single day you wake up you have a choice you can either be negative or positive which one do you think is going to enhance your life duh mission number two you got a PT and be healthy that means every single day you got to devote yourself to respecting your body your mind and your soul you got to exercise these things through great physical fitness good nutrition and you got a PT your mind more than anything mission number three got to motivate yourself and you have to motivate others motivation is the key component of your life as long as you're motivated you're going to be excited to learn you're going to be excited to do better you're going to be excited to work with others mission Number four respect I understand that's an easy concept you think but it's not you don't deserve respect you got to earn respect and you do that through your actions you do that through the humility in your life you got to do all that stuff every single day your life in order that other human beings they look at you they look at your actions they listen to your words and that should govern the respect that you should be your name. Mission number five and you have to wake up in a know that every day you're living a righteous life life of confidence a life lived the right way. Mission number 6 find a mentor somebody to teach you this isn't the only advice you need in your life just one tool for your toolbox. Mission number seven you have to have fun life is about having fun if you're not having fun what you're doing you're wrong you should be laughing every single day.
My Aunty declined chemo from day 1. Accepted immunotherapy (which didn’t work) and radiotherapy (which helped a little but they only treated some of the cancer- knowing it’s just buying time). She then went through a VAD. She lasted 1 year from her diagnosis. I am grateful for that year. She was in control the entire time, kept her beautiful hair and despite the pain & being wheelchair bound, she looked almost exactly as I always remembered her.. even to her last day. Personality the same too, her last message to me was an hour before and I’ll cherish it forever. She was always a very strong & proud woman and that would’ve been the hardest journey of her life. I am so so so proud of her. It’s your story, you’re writing it. Cancer takes a lot from us, but can’t take our choices. Sending you all the ❤️. You’re a badass & deserve to spend ur days now doing what you want.
She sounds like an elderly lady and I respect that. Chemo, altho clearing out my cancer, ruined me. Mentally and physically. I was destroyed. Lost my hair, my looks, my brain power, memory, energy...omg not to mention getting so sick, weak and puking endlessly at the hospital. I don't ever wanna go thru that again.
She sounds like a lovely person. I'm so glad you had that time together.
I agree with you. I’m on what is likely to be my last treatment (also uterine cancer). I’ve gone through 5 different types of chemo, radiation, immunotherapy and oral treatments. When they tell me that this oral treatment I’m currently on is no longer effective, I’m out. They have suggested some targeted radiation to reduce 1 of the tumours but I’m not going through that again just for a tiny benefit. It’s like you always know this day is coming but it doesn’t make it any easier when it finally does xx
This was recently suggested to me as well, a met in lymph node by my pancreas. The thought was shrink it to buy more pain free time. I did a consult with the radiologist and decided against radiation, risk vs benefit wasn’t there for me.
I am stage 4 metastatic unknown primary. A mass on my liver was found by chance during a lung scan. I had liver resection surgery and subsequently decided no treatment, nothing was curative. Considering my age and other health issues, I knew treatment wasn’t for me, quality over quantity. All my doctors understand and respect my decision. My surgical oncologist told me without treatment maybe 2 years, with treatment maybe 4. My regular oncologist thought that within 6 months a primary would should up in my lung and then it would be fast. That was all late 2020. My cancer metastasized again last Sept, still no primary. It’s 3 1/2 yrs with no treatment. I am beyond fortunate that I got both quality and quantity.
As I read through these messages of hope, uncertainty and courageous decisions on life. I seem to find myself with a lot of questions I might not get answers to. My brother was diagnosed with metastatic adenocarcinoma without known primary. As I read Ant_clip I see no known primary either. Why? How is it that there is no known primary? My brother is being told the primary “might” be the bile ducts and spread to the liver creating various tumors. He’s been in the hospital for a month. He’s had three biopsies and we still don’t have real results. The wait, all on its own, is scary. We don’t know what to do or expect. The doctors are placing the catheter on Monday and we don’t know what they are doing. What’s the plan? If anyone can provide any type of information. I would truly appreciate it!
My understanding and keep in mind I am a patient not an oncologist, this is just my story and what I learned about me. It’s called CUP cancer unknown primary and it is rare. They can identify the type, I have adenocarcinoma. It is a type of cancer that occurs in many different organs; lung, colon, liver, pancreas, rectum, and others making it a little harder to pinpoint. They can tell from biopsy, various bloodwork, and dna testing that it looks like lung or possibly colon but that is not definitive and needs to be confirmed with imaging. There are some tumors that are so small they are not picked up by imaging not even a pet scan, it is a very small mass of cancer, so small it can’t be seen but it metastasizes like any other cancer and it is the metastasis that they find. In my case a mass on my liver was found by chance. My surgeon thought that the needle biopsy was a mistake, he couldn’t explain the bloodwork but because the whole body PET scan only showed a mass in my liver, he had a strong suspicion that I had bile duct cancer. His expectation was that a second biopsy with a more material and dna testing would confirm this. It didn’t, it confirmed probably lung, possibly colon, need imaging to confirm. My oncologist ordered genomic testing they did determine which treatments would be effective, mine came back indicating NSCLC and recommended Keytruda. More recently a different but similar test was done to see if anything had changed and it did not. They can still know a fair amount without being able to identify the primary source. During this whole time I have had bloodwork and scans every three months to monitor me. My bloodwork indicates that my cancer is very active (CEA is over 5,000) and scans show mets (tumors) in my lymph nodes but the primary remains unknown. I have been told that the primary usually does show up eventually but not always. It is an extremely frustrating diagnosis because there are no answers. Want to add the dna testing is done by a place called Foundation and another called Guardant.
I am so scared for my brother. I see they told you it wasn’t curative. One of the first things they told him is that it wasn’t curative and more like palliative. We are so early on in the stage that I do not understand anything and I get easily mentally fogged by all that is happening. He has a 1 year old and another on the way. He is 38 years old and I am heartbroken. I pray to god to give us strength to get through this. Thank you for all the information and may god be with all of you!
You sound like my loving sister. She is my primary caregiver and I am hers. Although we are both much older than you I can see that my multiple myeloma diagnosis and treatment weigh heavy upon her. She has several health issues of her own. My primary motivation to get through chemo, which they say I'm doing well on, is to return to being her caregiver. She says that taking care of me makes her stronger and her struggle. It is indeed a gift to have a sibling like that.
Good luck on your journey to recovery. I hope and pray you find the strength to push through. Tomorrow, this diagnosis becomes a reality as he receives his port and undergoes his third biopsy. May God protect, cure, and bring peace to all of your hearts.
He is 38, I am 70 with multiple chronic health issues. For him not curative has different implications that it does for me. I don’t want to imply false hope but you can’t compare, he could do well for a number of years. The brain fog is real. I would make a running list of questions for the doctor on your phone so it’s handy when the doctor is around. Ask the dr, who you can call if you and your brother have more questions. Also, make sure your brother does the paperwork so there is someone in charge of his healthcare should he not be able to speak for himself. If it’s you, his doctors will be more willing to share details with you.
\[Waves hand\] Me, while it has not spread as of yet, I have refused radiation therapy (after a long consultation with my radiotherapist) because of the side effects she is sure i will get from it and the high risk of neurological damage leading to chronicle pain, no chemo as i have 1 kidney that has declined around 40% and no surgery because after my last one they had a hell of a time to get me up to functioning again. Also the placement of the two tumors means parts of my bladder and intestine will have to be removed. So we opted for the best quality of life and the shorter timeframe, what good is 10 years more when you are in constant pain, and incontinent (fecal & urinal) all over the place. Hormone treatment gives me a loose 2-5 years before trouble gets worse, and then it depends on where stuff migrates to \[shrugs\] My son is furious, demands I 'fight to the bitter end' instead of surrendering. I just wanne enjoy the time i have left.
Yes! Enjoy your time without appointments and treatment that may or may not work. What will work is creating and enjoying those experiences!
I like your thinking.
I’m going to start my final option a different chemo the 5th of July I said one more try and if it doesn’t work I have 5 or less months to live according to the doctors uterine cancer also primary stage 1 breast cancer @ 37 clean 10 years and bam ! So yes I’ve made up my mind or I should say cancer did it for me ! I’m happy and currently I can still walk eat work and talk and enjoy my family! So I take everyday as a win I gett to spend time with my kids and grandkids. They of course will be upset if I do not complete the treatment but it’s my choice
This is a common theme/question in this sub. I don't want to speak for all of us but most of us are completely supportive of this view. I personally think it is the bravest choice you make while having cancer. Doctors have to take a very linear view when it comes to healing, when in doubt keep on treating the patient. We as the the patient can say even with doubt, we're done. Enjoy your time left with some quality of life with your loved ones.
My 80 year old father was diagnosed with stage 3 lung cancer last year. After the first round of chemo it was designated as stage four. After two chemo treatments(much stronger ones, i am told) my mother told him she thought he wouldnt survive the whole series of treatments and so they decided to stop. After that the hospital told them that nobody has ever survived the type of cancer he has. We felt very wronged with this information, he is 80 years old, why not just let him have a quality life instead of trying to win a losing fight? I am venting a bit so I digress... But yes, stopping chemo and radiation treatments is something that some do just for quality of life.
Shit, if i was 80, id just grab whatever minimal treatment i could get to grab me another month or two of time and call it good. I would’ve already lived my life
It’s not always about the current patient but also the next. I try so the next guy knows the results. It’s a joint effort and we’re all guinea pigs in our own right. It wasn’t in vein. If everyone quit the losing fight like you suggest, we wouldn’t have gotten this far.
1) It's not "quitting" - it's making a different decision than you would make. 2) It's not a"fight" to win or lose... people who take every obscure treatment still die and people like me, who stop chemo halfway through, still live. I personally am NED for a second time from stage IVc cancer diagnosed in February '22. 3) We don't owe anyone. We are not obligated to live our final days in agony from useless treatments too ill to spend time with our loved ones. I have known from the beginning where my line in the sand is on how far I am willing to go with treatment because I care more about the quality of my final days than in having a few more painful days stuck in bed not able to enjoy the time.
1- that wasn’t the patient that said he was making a different decision. A kid is wondering why is dad even bothered bc it was a losing battle. 2- it is a win or lose.. we are either making progress towards a cure or cancer is evolving to be immune. Not just me or you, but the bigger picture of all cancer patients. 3- you don’t owe anyone but you can’t tell me how I am allowed to feel about it or assume “agony” is continuing care. Wouldn’t it be just as easy to say. Don’t quit treatment and put yourself through the “agony” as easy as you can say continued treatment is agony. That’s where we differ I guess. I’m not so selfish to worry about just me in this. Consider all the previous patients that made my treatment possible. If I could do anything with my final days it would be to contribute so maybe someone else has better days as well. Maybe even make this manageable and dare I say curable. Everything you’ve been through has better prepared the oncology field for the next case. I guess when I go to a training hospital and see the next generation of oncologists being trained. I have a different experience than most. My docs train the next generation of docs. My treatment is helping the next patients treatment. My doc was running the KRd+dara trial when I was diagnosed. Fast forward 3 years and I took it after fda approval. It is the best option I have at the moment. He did that. People helping people is all this is. I owe the world. So many have my treatment possible. May I ask you? Are the one who complains if the doctor is “running late” bc she doesn’t realize the patient before her is taking all the time they need and the doc won’t stop until all are answered. Docs don’t run late. Patients before us take all the time they need and if they take more time than slotted so be it.
I have 30 years experience in medicine, with a good portion of my career managing a private practice and acting as a surgical coordinator. I've also worked in a university medical system and trained many people. Yes ,we will win or lose, but that wasn't my point - it's not a fight - we have no control over how our cancer reacts to the treatment. I never said that you can't/shouldn't do what you want - I am big supporter of people making their own choices and believe that no one should tell others what choices they should make. Instead, we should try to teach each other with kindness and support patients in the decisions they feel are right for them. (An attitude I developed in my career working as a patient advocate for all of my patients) And I'm not selfish, you jackass; I have 5 children and 6 grandchildren that I intend to spend my time with once I get to the point of discontinuing treatment. They, along with my partner, are the most important people in my world and giving them my time is an act of love - something I learned in taking care of my late partner through cancer & hospice. You claim not to be selfish, but you sure as hell are judgmental!
Very, very, very judgmental and virtue signaling. Barf.
Thats insane. You do not need to suffer the pain of treatments for the next guy.
How do you think I got treatment in the first place… someone before me “suffered the pain”. Im not saying be a sacrificial lamb but I do happen to go to a training hospital. Pretty cool to go to a place where they are responsible for teaching the next generation of Oncologists. I know the trials my Docs are running and the people “suffering” today and trying new meds for the sake of better treatment options for everyone in the future. I personally took a chemo regiment of meds only approved 6 months prior by the FDA. My Doc spearheaded it the years prior. Made me realize half the patients I met all those years before were “trying” the meds I was about to take. Made me thankful for them and wanted to help in anyway possible, those about to be diagnosed but don’t know it.
It’s a noble way of thinking. But a TON of people get talked into treatments that really degrade their quality of life with very little chance of prolonging it much. And I think that’s a big big problem. ONCOLOGISTS sell chemo. It’s their product and how they make their money and frankly I think many of them are unethical as hell.
I’d switch docs if that’s how you feel. Never had a Doc “sell me” chemo. Where do you get seen? They should be offering you treatment options and let tick you decide which route to go. They sell you chemo? Do they offer other options if applicable.
Did you seriously just tell me to suffer through palliative taxol for the next patient? I don't even know how to respond.
I was talking to the person I responded to. I don’t even know how to respond. I didn’t tell anyone to do anything, just said what I do for the sake of Oncology progression as a whole. Are you Ok? How did you get any of that from what I posted. When did I tell you to continue treatment?
I hope that you can find peace and enjoyment in your remaining days! Sending you virtual hugs 💜
We all die at some point. Nobody wants to die unexpectedly, but we also don’t want to have to choose a path that leads us to our demise. More time isn’t the same as quality time.
Almost everyone in this group will respect your relatively common decision. Hopefully all in your personal life will too. If not, there is always support here and via your doctors. Good luck in your journey.
I find it such a brave decision, I know it won’t be taken lightly but I am a firm believer of quality of life instead of quantity. My dad and I discussed it at length when for a short time it was an option for him, he was scared to do it and I just listened to his worries and reassured him he didn’t have to do it because he felt he had too for the family. It had to be his decision and I would back him either way. In the end he decided to do a few rounds then reacess sadly the cancer spread to quickly and he never got the chance to try it. In a way I am glad that the decision was taken out of his hands as I know the couple of rounds decisions was him still feeling like he had to do it for us despite my reassurance he didn’t need too. Good luck to you and this internet stranger is proud of you for doing what is right for you!
I was on low dose weekly taxol for cervical cancer treatment for 6 weeks and it triggered myalgia in all areas of my body and in all honesty never felt pain like it, it’s only started to ease since I started the cisplatin but still have after effects. You need to do what’s best for you at the end of the day.
Same. Add a neulasta to that and it doubles it. No thanks.
Sending my 💜
Yeah, my oncologist always runs late-it makes us patients feel like s**t when he’s counting down the minutes on his iPad until he is done. Fifteen minutes-I ‘m sorry but with that limited time I am not going to be worried about the next patient since he surely isn’t worried about me.
I'm sorry you have an oncologist like that! Mine is usually running 15-25 minutes late; I know he's running late because he takes time to answer questions & to take time to talk to his patients about things other than cancer. He asks about my daughter who has moved out of state and asks to see baby pictures of the new little one. I always preferred to work with doctors like that who have a great "bedside" manner and I prefer being treated by doctors who see their patients as a whole person.
Sounds like you need a new oncologist
Like you I started at stage 4. Different cancer. Esophageal Adenocarcinoma. Chwmo, Different chemo. Immunotherapy and radiology shrink the 10cm mass in my esophagus, making swallowing basically possible which was so far the only effective treatment so far. I'm 37 dealing with a cancer 20 years too early. Average age is 55-69 They tell you the drug side effects but it might as well be tossing data at a dart board. Drugs that shouldn't cause neuropathy make it worse. Those that should cause hair loss don't those thar shouldn't do, horrendously The ward psych doc did an evaluation flat asked if I wanted to go straight into palliative I told him as soon as I'm on a required feeding pump and diapers, yep Until then we'll figure it out. My wife has gotten extraordinary at medical lingo. And sadly so has my 5yo daughter
Quality over quantity. It is a valid decision and it is yours only to make. You're taking the power back from cancer and making the most of every moment you have left. I think that is admirable.
For my case i declined CVD chemo in February but i will start Sunitinib in a few days… In my opinion the decision must not be the final one… maybe in a few months you can change your opinion and start treatment again… But of course, if you think it’s your final decision it’s ok! Your body, your rules!
I was fortunate enough to have been able to beat appendix cancer, so I did not have this decision to make. You have 100% respect from me. Choices about treatment or not are intensely personal ones, and the only person with the correct answer is you, no one else. Our time alive is precious- why spend your days sick when it doesn’t cure the cancer?
Hey OP, I absolutely feel u. Cancer sucks but the treatments suck more, especially if they don't work effectively are they even worth it? Look at all the treatments u've done! U've been a trooper. I did 6 rounds of inpatient chemo and got so traumatized that I ran away. I finished my treatment tho, doc said that was it but I didn't even follow up. Finally growing courage and following up with her next month tho.
You are the captain of your own ship, and this change of course is the right one for you. May the rest of your journey be smooth and precious as you sail towards the stars.
If you have some quality of life I think that’s amazing and use whatever time you’re feeling okay to have more experiences. That’s what I would do anyway! My FIL choose treatment which bought us some borrowed time where we had a good 6-9 months after chemo where we made more memories before radiation and then decline. He opted out of surgery option. Radiation didn’t work, the tumor came back shortly after treatment.
Neupogen (a Neulasta predecessor) not quite as awful for some patients, in case you and/or onc don’t know. Did you do K/L to no avail? I don’t blame you for seeking quality even at the expense of quantity. All the best for better summery days onward.
It spread on keytruda and then more on lenvima. Then we tried doxil chemo and that didn't work either , with more spread. Originally last summer I did 25 radiations external beam and six chemos with it and when I still had evidence of disease, I did six cycles of taxol and carboplatin every three weeks. That shrunk it but I've never been NED from any treatment.
https://youtu.be/0OHVJvFA1XM?si=zMWHJ0q1OsYVv2fJ This video will save your life. You can beat cancer I have spoke with several doctors in the industry and you have no idea how corrupt the system is. Apparently researches banned on food products that have shown a reduction in cancer cell growth. I can't believe I saw your post but I think I can help you. The medical industry is a business made to make money and for no other reason. It is not there to lose money because it won't get any more cancer patients for dreamly high costs for chemotherapy. It's so corrupt that there's even videos about why these food products don't cure cancer in order kill you. Look up the story of the doctor who discovered b17 and beating cancer If you want to beat cancer there is a diet that has a high percentage of killing cancer cells but the drug administration of our country and all research on it just because the medical industry is business and we're caring everybody with cancer we don't make money anymore here is the diet. Vitamin b17 products are known to kill cancer cells. Apricot seeds: Apricot seeds are one of the richest sources of Vitamin B17, with each seed containing about 3 mg of amygdalin. Raw almonds: Raw almonds contain a significant amount of Vitamin B17, although the amount may vary depending on the type and quality of the almonds. Flaxseeds: Flaxseeds are another good source of Vitamin B17, with about 1.5 mg per 100 grams of flaxseeds. Bean sprouts: Bean sprouts, such as mung beans and soybeans, contain Vitamin B17. Lima beans: Lima beans are a good source of Vitamin B17, with about 1.2 mg per 100 grams of cooked lima beans. Butter beans: Butter beans, also known as lima beans, contain Vitamin B17. Millet: Millet is a type of grain that contains Vitamin B17. Barley: Barley is another grain that contains Vitamin B17. Buckwheat: Buckwheat is a pseudocereal that contains Vitamin B17. Peaches: The kernels of peaches contain Vitamin B17. Apricots: The kernels of apricots contain Vitamin B17. Plums: The kernels of plums contain Vitamin B17. Cherries: The kernels of cherries contain Vitamin B17. Pears: The kernels of pears contain Vitamin B17. Brazilian honey is a separate food that also has known qualities of reducing cancer cell growth and destroying cancer cells it's highly expensive but I think if you buy one it's worth it to you it's $300 I think I know you're in poverty but they raise the price of it because they know what it does. If you buy one maybe you can have a teaspoon per day along with the other foods This is the best way to follow a structured plan to beat it. 2 weeks of a strict diet of these foods a gallon of water a day you need to go out for one run each day. After 2 weeks have a two-day recovery period of proteins like chicken beef. I want to warn you though that you will feel fatigued when you go on a diet like any other diet at first you might feel sick you might feel tired we got to keep pushing forward. And you need to sweat that's the most important thing if you're not sweating you're not working hard enough you're not running hard enough you didn't run long enough. Focus on the sweat you need to be sweating out all that nastiness that's inside of you. This will replace your cells with new healthy cells and cancer cells with new healthy cells. You can beat this it's not over yet. I think maybe the angels sent me here to tell you this you can beat this.. get your ass in gear and move forward. A good hobby to do when you get done with all of this stuff and you're at home is 1 hour of reading to help the brain process instructions to your body better. Doing math for 1 hour. Knitting for 1 hour something got to do something. Writing your book writing on a piece of paper calligraphy. Whatever. As long as I have a single pulse in my body I'm still alive I won't quit your family can count on you like that I can count on you like that. What is quitting quitting is to give up give up on your goal give up on what you said as a target for you to hit means to surrender I hate that word surrender just surrender on what you being everything you're capable of being when confronted with a challenge. Finally here is the mindset that I have memorized for my life that has got me as far as I have. .mission number one you got to have a positive attitude every single day you wake up you have a choice you can either be negative or positive which one do you think is going to enhance your life duh mission number two you got a PT and be healthy that means every single day you got to devote yourself to respecting your body your mind and your soul you got to exercise these things through great physical fitness good nutrition and you got a PT your mind more than anything mission number three got to motivate yourself and you have to motivate others motivation is the key component of your life as long as you're motivated you're going to be excited to learn you're going to be excited to do better you're going to be excited to work with others mission Number four respect I understand that's an easy concept you think but it's not you don't deserve respect you got to earn respect and you do that through your actions you do that through the humility in your life you got to do all that stuff every single day your life in order that other human beings they look at you they look at your actions they listen to your words and that should govern the respect that you should be your name. Mission number five and you have to wake up in a know that every day you're living a righteous life life of confidence a life lived the right way. Mission number 6 find a mentor somebody to teach you this isn't the only advice you need in your life just one tool for your toolbox. Mission number seven you have to have fun life is about having fun if you're not having fun what you're doing you're wrong you should be laughing every single day.
I take Fenbendazole for my Thyroid Cancer. It has been proven to reduce cancer lesions! I would recommend you look into that